Re: Long term results?

January 1, 2004

,

I am curious to know too about long term cases.

I can understand your difficulty. I too feel that way about some things

(old habits die hard).

But one thing I do know is that after learning about , I started doing

things differently with my family (especially our 2yod who is showing signs

of apraxia). We are not on all the medications that most children are,

but I do believe there is something to the antiviral, antifungal, and

antibacterial they are on. Coconut oil is all three of those and more. I

know that a lot of people on this list would warn you about coconut oil

being a high allergen, but if your baby did fine with formula, he would do

fine with coconut oil. Coconut oil is a major ingredient in baby formula.

And I believe there is something to the diet (although I just cannot subcome

to giving my child artificial sweeteners and highly over processed foods).

We have been more aware of the amounts of sugar she (we all really) get, as

well as lowering her carb intake.

All I know is that after making those changes (as well as working more on

her speech with her), she has made tremendous progress. She is speaking two

word sentences all the time now (no more grunts or one word-ers) and is even

starting three word sentences (at least 3 or more a day!). She still has

difficulty with words she doesn't know, but she has suddenly become very

interested in learning the words. She used to eat and eat and eat until she

would make herself sick, and now she knows when she is full and will even

leave food on her plate!

I guess what I am trying to say is that YOU know YOUR son better than

anyone. It doesn't hurt to pick and choose some of the stuff from the

site and implement it, but don't think that just because you do everything

Dr. G suggests that your son is going to be healed or completely well.

a

On 12/31/03 1:36 PM, " marriedtoawonderfulman "

<marriedtoawonderfulman@...> wrote:

> I have been reading up on this, and I am just having a really hard time

> believing all this stuff about .

>

> Thanks,

>

January 2, 2004

,

What kind of interventions are you doing?? You may very well be doing

things that reduce the load on the immune system as well, which is the whole

point of the protocol. My son has been on the protocol for 9 months

with antivirals, antifungals, SSRIS, and a very limited diet. He is 3.5

now. His lab results looked very bad initially but his functioning was

relatively high-- the only " diagnosis " he qualified for was SID and apraxia.

Now, his labs are looking better and he's made trememdous progress socially

and esp. in speech. He went from about 20 very rough approximations to over

300+ complete words (? I can't keep track, as he can easily imitate words

just from hearing them now instead of having to be taught how to motor plan

them) He uses up to 8 word phrases. His apraxia is still evident, esp. in

longer phrases, but his progress in speech is simply astounding. He won't

stop talking now!

His only major medical issue is occasional staring spells that come and go,

which were much more frequent and intense before we started the protocol, as

well as his food intolerances. His stools are totally normal now, something

I thought would NEVER happen. His only remaining visibly " abnormal "

behavior is his habit of flapping and dancing his feet when he's excited,

and we're still working on social skills, tho he does great with familiar

kids in a familiar setting. He just recently began " pretending " with toys at

a more normal level and thinking creatively (building a sun figure out of

Tinkertoys and telling me " go see sun! " , without ever seeing anyone make a

sun figure like that before) He does regress whenever he's sick. Nine

months ago, he would only play with cause/effect toys and ignored/ran away

from other kids. He spent most of his time clinging to me and stressing out.

We were gf/cf before starting , which helped with his staring and

stools, but not with speech or overall functioning.

Antivirals have absolutely helped his speech the most. ST was going nowhere

Good luck with your decisions. It's so hard to know what to do. For

us, I absolutely know we made the right decision for our son. The proof is

right in front of me, telling me that his train is wearing pajamas so

he can go to sleep under our new blanket, LOL.

Becky

Long term results?

> I have been reading up on this, and I am just having a really hard time

> believing all this stuff about . Maybe it is because I have dealt

with my

> son for two years and have seen results on my own, without doing any of

the

> protocol or medications. I am curious to hear from someone whose

> child has been on the protocol and the medications and has been healed as

> a result. How long have most of your children been on the meds and

> protocol? How much improvement did you see with the meds? Who has

> been treated the longest and how much improvemnt occured from the time

> you first started the protocol and now?

>

> I am not trying to hurt anyone's feelings, but trying to determine what is

best

> for my son. I don't have a problem with the protocol, but all the testing

and

> medications - I really don't want to put my baby through that if I don't

have to. I

> have been seeing results on my own, but it would be nice to have the

results

> come faster. I want my son to be like the other 2 year olds.

>

> Thanks,

>

> Responsibility for the content of this message lies strictly with

> the original author, and is not necessarily endorsed by or the

> opinion of the Research Institute.

>

January 2, 2004

Which antifungal and antiviral is your son on? Also which ssri ? It sounds

like your progress is wonderful.

Long term results?

> I have been reading up on this, and I am just having a really hard time

> believing all this stuff about . Maybe it is because I have dealt

with my

> son for two years and have seen results on my own, without doing any of

the

> protocol or medications. I am curious to hear from someone whose

> child has been on the protocol and the medications and has been healed as

> a result. How long have most of your children been on the meds and

> protocol? How much improvement did you see with the meds? Who has

> been treated the longest and how much improvemnt occured from the time

> you first started the protocol and now?

>

> I am not trying to hurt anyone's feelings, but trying to determine what is

best

> for my son. I don't have a problem with the protocol, but all the testing

and

> medications - I really don't want to put my baby through that if I don't

have to. I

> have been seeing results on my own, but it would be nice to have the

results

> come faster. I want my son to be like the other 2 year olds.

>

> Thanks,

>

> Responsibility for the content of this message lies strictly with

> the original author, and is not necessarily endorsed by or the

> opinion of the Research Institute.

>

January 2, 2004

We're still relatively new to -- just a year on protocol as of last week

-- so I'm not one to share long-term results but I can share what we've seen

in the past year. Also, it is important to note that my son did make quite a

bit of progress with various treatments and therapies prior to starting

last year at age 11. For him, seems to be a big piece of the puzzle on

his healing journey, however, I think many pieces that went before it were also

necessary. He was one of those kids who seemed somewhat normal (though I can

see some early signs now that I know what to look for) who regressed around

age 2. At his sickest/most challenged, he was totally incapsulated inside

himself; no language or immitation; barely any eye contact; couldn't sit still

to

learn if his life depended on it; very very stimmy spending most of his day

shaking, jumping, etc; extremely sensative sensorily so much that he was

terrified of leaving the house and would scream and fight when we tried to take

him

outside or put him in a car, wouldn't wear clothes, etc.; extremely limited in

the foods he'd eat; many many motor issues and other problems; numerous

seizures, very thin, pale and weak, etc etc etc... you get the idea.

When he started a year ago, he was very social, conversational, catching

up on academics, much healthier with a varied diet, wearing clothes, liking

to be in groups and doing fairly well but his motor skills were still lagging

quite a bit, along with many focus and attention difficulties, low auditory

processing and a tendency to shut down in public or group settings often running

off without awareness of dangers, etc. Now, a year into , he is much much

more focused, able to blend in fairly well with kids a few years younger than

him and beginning to do well with kids his age, not shutting down in public

(most of the time) so he is able to do much more on his own, motor skills

catching up quite a bit (though still extremely behind), has gained three years

in

reading comprehension, two years in language/conversational skills and three

years in auditory processing. He's also now very seriously talking about what

he's going to do for his first job, when he'll get his driver's license and

how he's going to be out on his own in eight years. While it is still an iffy,

scary thought, it is much much more possible than it was a year ago.

For him, the protocol has been mostly helpful. There have been a few

things that weren't for him and Dr. G is still working out quite a bit with him

but his progress is very obvious and continual.

Best wishes with whatever route you choose. Trust your instincts with your

child.

Gaylen

So for his experience ---

January 4, 2004

,

antiviral Famvir, SSRI Celexa and antifungal Diflucan. Were on

Nizoral for 9 mos with no effects or die off but Diflucan seems to work

better.

Keep in mind, though, my son started out on the protocol as very high

functioning (could never get an ASD diagnosis, I tried) his main problems

being absence seizures, SID and apraxia, and just being a little " different "